NHS Continuing Healthcare, explained for the family doing the care

What NHS Continuing Healthcare is

NHS Continuing Healthcare, usually shortened to CHC, is a package of ongoing care arranged and funded by the NHS for an adult whose needs have been assessed as adding up to what the framework calls a primary health need. It is not a benefit and it is not means tested. It can be delivered in a care home or in the person's own home, and where it applies the NHS is responsible for the whole package of assessed health and associated social care needs. Source: Department of Health and Social Care, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, last updated 27 October 2022.

In England the decision sits with the integrated care board for the area. The legal duties around assessment, decision making and review are set out in Part 6 of the Standing Rules Regulations. Source: The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012, Part 6.

What the decision is not based on

This is the part families are most often surprised by. The framework states that eligibility is not determined by a diagnosis, by the setting where care is delivered, by who is currently providing or funding the care, or by the use of NHS employed staff. Source: Department of Health and Social Care, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, last updated 27 October 2022.

• A dementia diagnosis, on its own, decides nothing.
• Living in a care home, on its own, decides nothing.
• The fact that a family has been managing unpaid for years decides nothing, and does not count against the person.

What is looked at instead is the nature of the needs, their intensity, their complexity and their unpredictability, taken together across the whole picture rather than domain by domain in isolation. Source: Department of Health and Social Care, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, last updated 27 October 2022.

Checklist first, then the full assessment

There are two distinct stages, and mixing them up causes a lot of avoidable confusion.

• The Checklist. A screening tool. Its only job is to decide whether a full assessment should happen. It is not an assessment of eligibility and it never decides the outcome. Source: Department of Health and Social Care, NHS continuing healthcare checklist guidance, last updated 27 October 2022. More detail on the Checklist stage.
• The full assessment. A multidisciplinary team completes the Decision Support Tool across 12 care domains, and the integrated care board uses that completed tool to make the eligibility decision. Source: Department of Health and Social Care, NHS continuing healthcare decision support tool guidance, last updated 27 October 2022.

The 12 care domains

The Decision Support Tool organises the whole conversation into 12 care domains. Knowing their names is genuinely useful, because it tells you what the meeting will ask about and in what order.

• Breathing. Breathing, and any help or equipment needed for it.
• Nutrition: food and drink. Eating and drinking, and any help, equipment or feeding regime needed.
• Continence. Bladder and bowel needs, and the help these take.
• Skin and tissue viability. Skin condition, wounds and pressure areas, and the care these take.
• Mobility. Moving, position, transfers and falls, and the help these take.
• Communication. Expressing needs and understanding others, and the help this takes.
• Psychological and emotional needs. Mood, distress, anxiety and motivation, and the support these take.
• Cognition. Memory, understanding, awareness of risk and decision making.
• Behaviour. Behaviour that carries risk to them or to others, and how it is managed.
• Drug therapies and medication: symptom control. Medication and symptom control, including pain, and the management these take.
• Altered states of consciousness. Episodes of reduced or lost consciousness, and what they require.
• Other significant care needs. Needs that matter but do not fit the other eleven domains. The framework provides this domain for exactly that purpose.

Each domain has levels of need attached to it in the tool itself. We do not publish or interpret those levels, and we never tell a family what level their relative would score, because that is the assessing team's job and guessing at it in advance helps nobody. There is a fuller, carer language walk through of each domain on the 12 domains page. Source: Department of Health and Social Care, NHS continuing healthcare decision support tool guidance, last updated 27 October 2022.

Who decides, and what that means for you

Eligibility for NHS Continuing Healthcare is decided by the integrated care board, informed by a multidisciplinary team assessment. We are not part of that assessment and cannot attend it, and nothing here predicts or implies a decision.

That has a practical consequence. The single thing you can control is whether the information you hold reaches the people in the room, in the form they are working in, before the decision is made. Once a completed Decision Support Tool has gone to the board, adding your account afterwards is a harder conversation than putting it in beforehand.

The Fast Track pathway, and when this is the wrong page

There is a separate route called the Fast Track Pathway. It is for someone with a rapidly deteriorating condition that may be entering a terminal phase, and it is completed by an appropriate clinician so that care can be put in place urgently, without waiting for the full assessment process. Source: Department of Health and Social Care, NHS continuing healthcare fast track pathway tool guidance, last updated 27 October 2022.

We want to be direct about this. If that is your situation, our pack is not the right thing to buy, and our intake would waste time you do not have. Ask the person's GP, community nurse, hospital palliative care team or hospice clinician about a Fast Track Pathway Tool today. Free support is available from Marie Curie, Hospice UK, Age UK and Carers UK, and from an NHS Complaints Advocacy service if the request is refused. Our own intake screens for this and will stop you before payment rather than after it.

Where a family's account fits

The framework does not treat the family as a bystander. The decision support tool guidance says practitioners should make all reasonable efforts to seek the participation of the individual or their representative at each stage, that their view should be considered, and that where consent to share information has been given, the views and knowledge of family members, friends, advocates and representatives should be taken into account. Source: Department of Health and Social Care, NHS continuing healthcare decision support tool guidance, last updated 27 October 2022.

In practice, the information that gets lost is almost always the same information: how often something happens at night, how long a task really takes, how many people it takes, what happened the last time help arrived late, and how unpredictable the week actually is. A professional sees an hour. You see the year.

If it helps to start writing that down before anything else, our typical day record sheet is free and needs no email address. If you would rather have it written up properly across all 12 domains, that is what the CHC Family Evidence Pack does. It costs £129, one payment, VAT included, with a 180 day any-reason refund.

Questions families ask

Sources

• Department of Health and Social Care, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, last updated 27 October 2022.
• Department of Health and Social Care, NHS continuing healthcare decision support tool guidance, last updated 27 October 2022.
• Department of Health and Social Care, NHS continuing healthcare checklist guidance, last updated 27 October 2022.
• Department of Health and Social Care, NHS continuing healthcare fast track pathway tool guidance, last updated 27 October 2022.
• The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012, Part 6.
• NHS website, NHS continuing healthcare, nhs.uk/conditions/social-care-and-support-guide.

We cite primary documents and date them, on every page, including the ones where the numbers are inconvenient to us. If you want to see how far we take that, our published evidence workings show the raw figures and the method behind them.